Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys

Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) substantially impacts the quality of life of many sufferers. Recently, cognitive behavioural therapy (CBT) and graded exercise therapy (GET) have been promoted as evidence-based treatments for ME/CFS, however patients anecdotally report that CBT and GET deliver little benefit, in comparison to pacing approaches. This paper explores patients’ symptom responses following these treatments versus Pacing Therapy, an approach favoured by many sufferers. We analyse data from a large cross-sectional patient survey (n=1,428) and compare our findings with those from comparable patient surveys (n=16,665), using a mix of descriptive statistics and regression analysis modelling. Findings from analysis of primary and secondary surveys suggest that CBT is of benefit to a small percentage of patients (8-35%); GET brings about large negative responses in patients (54-74%); while pacing is the most favoured treatment with the lowest negative response rate and the highest reported benefit (44-82%). While patient surveys are biased towards longer-term sufferers with more severe illness presentations, there appears to be a repeated pattern of responses across these surveys. CBT improves symptoms for a small proportion of patients with the majority unchanged. GET produces symptom worsening in up to half of all patients. Pacing brings about the largest positive improvement in symptoms with minimal negative responses and is reported to be the most appropriate treatment approach. Further research is needed to assess the reliability of these findings.